This month is HYDRANENCEPHLY awareness. Something obviously close to our hearts as Megan had this life limiting condition. Parts of the brain are absent and in Megan's case this was almost all of it but despite the prognosis that if she even survived birth and the first few days or weeks she lived to be 13 years old. Eighteen years ago we came up against no one knowing anything much about the condition at all and found ourselves drowning in the unknown. By chance and help of... technology we found a group called " Rays of Sunshine" a group formed by Barb Aleman in Canada who had first hand, having a daughter with the condition and started the group to help other families. The group was invaluable to us with so much help and information, always someone who had been there and got the tee shirt with symptoms we and the doctors floundered with. We still have many many friends that we have become very close to despite all the miles between us and some in UK too. This month is Hydranencephaly awareness and we join in their highlighting of the condition and the realisation that when the doctors say there is no hope for a child with this condition do not give up your fight.
Love and Hugs xxxxxxxxx